From noticing to suspecting: The initial stages in the information behaviour of informal caregivers of people with dementia

The information behaviour of informal caregivers of people with dementia was explored, from when the first symptoms of dementia were noticed until a decision to seek medical attention was made. Qualitative methods were applied and interviews conducted with 21 caregivers. Their information behaviour went through a sequence of three stages, in line with Holly Skodol Wilson’s temporal model [27]: (1) Information about the disease is noticed; (2) Interpretation of information – Normalizing and discounting; (3) Suspecting – Purposive information seeking begins. As their information need developed, as described by Taylor [15], the caregivers moved from relying on opportunistic information seeking at the first two stages, to using both opportunistic and purposive seeking on the third stage. After they had fully developed their information need, they could seek information that was useful for bridging their knowledge gap, which allowed them to move forward to the decision to seek medical advice for the patients. The second stage of the process was particularly complicated as the caregivers misinterpreted the information about dementia that they came across as signs of something else. More public discussion by professionals about dementia could provide the caregivers and the patients with a better understanding of the disease. This in turn might help to shorten the time spent at the second stage, making it possible for the caretakers to enter the third stage more quickly, and thereby to come to the decision to seek medical advice.